Patient Advocacy Group

Patient Advocacy Group

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  • To discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.

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  • The Alzheimer’s Association Delaware Valley Chapter is the premier source of information and support for the more than 489,000 residents in DE, NJ and PA.

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  • The American Association for Cancer Research (AACR) is the world’s first and largest professional organization dedicated to advancing cancer research.

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  • The American Cancer Society is a nationwide, community-based voluntary health organization dedicated to eliminating cancer as a major health problem.

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  • The American Diabetes Association (ADA) is the nation’s leading voluntary health organization fighting to bend the curve on the diabetes epidemic

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  • The American Liver Foundation (ALF) is a national, voluntary, non-profit organization dedicated to the prevention, treatment, and cure of liver diseases.

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  • The American Lung Association is the leading organization working to save lives by improving lung health and preventing lung disease

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  • The mission of the Amyloidosis Foundation is to increase education and awareness of amyloidosis and support research towards a cure.

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  • ArmorUp for Life is a women and minority-owned 501c3 advocacy and support organization that works to improve patient outcomes for those experiencing cancer

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  • Established in 1984, the Bone Health and Osteoporosis Foundation is the nation’s leading health organization dedicated to promoting strong bones for life

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  • The Castleman Disease Collaborative Network is a global initiative dedicated to accelerating research and treatment for Castleman disease. 

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  • Clear Thoughts Foundation's primary purpose is to raise funds to discover drugs & novel therapeutics to stop the effects of dementia & end the disease.

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  • The CLA is dedicated to supporting the community through liver disease awareness, prevention, education, advocacy and research

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  • The Crohn's & Colitis Foundation is the leading non-profit organization focused on both research and patient support for inflammatory bowel disease (IBD).

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  • Support for children and adults that are blind or visually impaired, funding research to treat disease and connect those affected to resources. 

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  • Non-profit advocating for people living with autonomic nervous system disorders by funding research, physician education, public awareness, patient empowerment

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  • Brings together those affected by bleeding disorders to feel a sense of connection and support through education, programming, advocacy, financial assistance

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  • Emily’s Entourage is a 501(c)3 organization that fast-tracks research for new treatments and a cure for rare nonsense mutations of Cystic Fibrosis.

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  • Their mission is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

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  • Empowering rare disease patient community to advocate for impactful, science-driven legislation & policy that advances lifesaving diagnoses, treatments, cures.

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  • The Friedreich's Ataxia Research Alliance (FARA) is a national, public, 501(c)(3), non-profit, tax-exempt organization

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  • Gaucher Community Alliances’s (GCA) mission is to help all those affected live their fullest life and alleviate some of the burden

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  • The Hepatitis B Foundation is a national non-profit organization dedicated to finding a cure and improving the quality of life for those affected by hepatitis B

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  • Action to Cure Kidney Cancer (ACKC) is a grassroots organization established in 2003 by kidney cancer patients and their families

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  • Little Hercules Foundation works to improve the lives of those diagnosed with – and families facing – Duchenne Muscular Dystrophy

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  • The Lupus Foundation of America, Philadelphia Tri-State Chapter is part of a national force devoted to solving the cruel mystery of lupus

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  • NAF is a membership supported nonprofit organization established in 1957 to help persons with Ataxia and their families.

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  • The National Blood Clot Alliance focuses on building awareness and building community among people who are affected by blood clots.

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  • The National CMV Foundation is a non-profit organization dedicated to eliminating childhood death & disability due to congenital cytomegalovirus.

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  • NephCure Kidney International’s mission is to accelerate research for effective treatments for rare forms of Nephrotic Syndrome.

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  • NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.

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  • The PA Breast Cancer Coalition is a network of breast cancer survivors and their families, staff, board of directors, volunteers and donors.

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  • Sick Cells' mission is to elevate the voices of the sickle cell disease (SCD) community and their stories of resilience.

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  • The organization provides free heart screenings to children, advocates for life-saving legislation, hosts awareness events, and promotes research

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  • SoldierSocks was originally incorporated under the Parent Name Start Now, Inc. (StartNow! Inc) on September 18th, 2009

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  • In 2013, Cal’s family started fundraising by selling cupcakes because they wanted to help children with leukodystrophy

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  • The Conley Cushings Fund will support the creation of awareness materials for family and friends of those suffering with Cushings

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  • We created the Emily Whitehead Foundation to help provide researchers with the funding they need to find less toxic treatments for pediatric cancer.

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  • RGI is an international non-profit that provides access to cutting edge research technologies, physicians, and scientists across the globe

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  • The Wescoe Foundation for Pulmonary Fibrosis provides support, advocacy and resources for patients and their families living with Idiopathic Pulmonary Fibrosis.

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  • We were founded to help meet the vast education and support needs of the bleeding disorders community in Western Pennsylvania.

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Life Sciences Pennsylvania was founded in 1989 by a biotech scientist at Penn State University.  Today it has grown to represent the entire life sciences industry – medical device companies, pharmaceutical companies, investment organizations, research institutions, and myriad service industries that support the life sciences in Pennsylvania.

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